How crazy is it that we had a 5.9 earthquake on Tuesday?!?!? And in true Schwartz fashion...it happened while I was at work and on Stephen's first day with his new nurse, Maureen. Meaning the first day of work Stephen ended up in the ER, the second day of work Stephen's nurse didn't show up and this week we had a earthquake! Seriously, what are the chances?! The earthquake, in hindsight, was actually pretty cool, but what wasn't so cool was that our cell phone and landline phone service didn't work for about an hour and a half. Email service thankfully worked so Bill and I could reach each other, but neither of us could get through to Stephen's nurse to make sure everything at home was ok. Kind of scary if we were really in the middle of some type of big emergency. But at the end of the day, everything at home was fine, Stephen was all smiles when I got home and Maureen seemed to do a great job. So it looks like we've found a great nurse to take care of Stephen while I'm at work. Thank goodness!
In other "kidney news," yesterday we had our weekly nephrology appointment and are making some changes to Stephen's dialysis, diet/nutrition, and medications. Stephen's weight has become a big topic of late and we're finally going to make some changes to slow his weight gain down. He's a big chunky money! :) So we're decreasing his caloric amount (calories per ounce of formula) and daily amount of formula while also switching up his dialysis fluid so he'll actually stop absorbing so much glucose. He's on a 2.5% glucose dialysis fluid and absorbing way too much of it. Basically, it's like Halloween everyday for little Stephen! So we're going to do a mixture of 2.5% and 1.5% solution so he'lll hopefully absorb less sugar overnight. And because his albumin has been low over the past couple of weeks, the doctors want him to get an albumin infusion. It's a medication he'll get through an IV at the hospital. One of the side-affects of low albumin is low blood pressure which we've been experiencing for the past week or so. And it's possible that his low albumin is also an indication that Stephen's liver function isn't as good as it was a few months ago. But his reflux seems to be doing a little better and I'm really looking forward to taking him to see a new GI doctor at Children's National next week!
Now we're hunkering down and getting ready to weather out the storm this weekend!
Congrats on the new (and reliable) nurse!!
ReplyDeleteHi Lindsey,
ReplyDeleteGlad to hear you are all doing well after the "shake". Stephen will have a lot of adventures to read about when he is older and reviews his blog:) 'So happy to hear that you have found a nurse and are seeing a new GI doc. Hopefully, it will not be too long until Stephen gets his new kidney and some of these problems will disappear! Now, batten down the hatches and then sit back and watch out for "Irene".:)
Hugs and prayers to all...
Aunt LuAnn
Yay new nurse! You are such an amazing mama. I am continually inspired by the care and dedication you give that precious boy. Still praying for all of you every day. Stay dry this weekend! Call if you need anything.
ReplyDeletexxoo
Sarah